Mount Alvernia High School

As a healthcare professional, I am truly grateful for all the work done by the Melanoma Foundation. It was a very powerful presentation and education is the key to any cure! Our students were fully engaged and I feel the information that was impartedWILL make a difference in their decision making regarding tanning.

We plan on having our grades 11&12 sign the Your Skin Is In pledge (these are our prom grades). You truly are making a difference in lives of people you touch!

A teacher came to me after the presentation and said she had a mole that she had been concerned about and she had called her doctor after school and made an appointment to get it checked! How powerful words can be!

Marla Serwin was 55 years old when she passed away from melanoma in November, 2012. She fought long and hard, but with determination, hope and action that inspired her countless friends and colleagues. She never stopped living her life to the fullest, despite the increasingly difficult treatments her diagnosis required. In doing so, she reminded all those around her how valuable each of their own days are, and how much stronger spirit is than circumstance.

Our cancer journey has been a shared experience. One person receives the cancer diagnosis but the caretaker also lives with the fear, the despair, the hope and the faith that if you have the best available medical care, you choose the right attitude and you have faith that God will guide you in your path, together you can overcome the odds. My husband, John, received the shattering news eight weeks after in situ surgery to remove a malignant tumor on his scalp that his cancer had metastasized into stage IV melanoma. We always said that “we had cancer” because we were both living with it.

During the first chapter of our journey, we naively thought John simply needed to recover from the surgery and we would be given a reprieve. We later called the 8- weeks post-surgery our honeymoon period. From the beginning, we had been informed that there was a 50/50 chance that the cancer had metastasized but we simply did not believe it. John felt good and we had so much that we wanted to do together.

Our lives were happy and blessed. John was still working full time but he was within a year of retirement. We had celebrated 36 happy years together. We had three adult children, two of whom were married, and two grandchildren. Time spent with our family and making memories with them were very important to us. We enjoyed traveling together and with the whole family, as often as we could.

The circle of our cancer life began with the addition of a new family member. The day that our third grandchild was born we learned that John’s cancer had metastasized. From the start of our married life, we never took a day for granted. The recurring theme of our life together had been and continued to be: “Every day is a gift.” Certainly, some gifts are better than others, but all are to be treasured because each day is precious.

John was an eternal optimist but always a realist. He truly felt that things happen for a purpose and that we have to make sense of our lives by how we embrace life’s challenges. He would find a new purpose in his life by being given a terminal cancer diagnosis. Always the teacher at heart, he wanted to show others that life was worth living even if you were living under a cloud.

When John asked our oncologist directly about his prognosis, the doctor was reluctant to give him a timeline. John wanted to know because he was a planner. He wanted to make the most of whatever time the doctors thought he might have. The doctor reluctantly answered that the average rate of survival at the time was probably six months to a year. John took that as a challenge that he would exceed the averages and he did. He truly lived, worked and loved life fully for five years.

In those five years, he agreed that he would do whatever it would take to survive. However, he wanted quality time not just quantity. And quality time he got but not without some very scary periods. When he first told his staff of his illness, he referred to the cancer journey as a scary, dark amusement park ride with many twists and turns, ups and downs.

To help me focus during the doctor’s office visits, I always had a notebook with me. I would write down what was being said. This helped me to listen and to be able to ask questions as treatments and prescriptions were changed to accommodate the side effects of the treatments. There were extreme highs and lows every time we had to change course. John used to say to our oncologist that as long as he had options to offer us, he was optimistic that he would find the right “cocktail” to stem the growth of his unique cancer.

There were so many people who were supporting us on this journey that I used my notes to create updates on John’s progress through emails. Every time he had results from a scan or a change of treatment plan, I would send out a message. I found this to be a cathartic exercise for me. Moreover, it was too emotionally draining to repeat the story again and again. The responses that we received from these emails became our biggest source of support and love throughout our cancer journey. It gave so many people, including former students and colleagues, a chance to connect with us, many who may not have taken the time under different circumstances. We felt that the cancer diagnosis had brought the gift of renewed friendships and contact with people whom we had crossed paths with during our lives.

Initially John started with Interferon treatments. After only two weeks of treatment, we knew that his cancer was not under control. It was at this point that scans confirmed that the cancer had metastasized. He then had two weeks of radiation. Both of these treatments left John with flu-like symptoms of general malaise and fatigue. We are fortunate to live only 24 miles from Boston. Many people offered to help with driving to and from appointments. I knew from the beginning that we would not get the long retirement that we had planned. These trips to and from the hospital and the time we spent together treating John’s illness were going to become a part of our retirement; unplanned, unwanted but nevertheless, precious time. A cancer diagnosis minimizes some of the choices you would like to make. We considered the diagnosis a blessing that allowed us to make the most of the time we could share, with the people whom we love and the memories we wanted to create.

Following two weeks of radiation, John was given the option of a clinical trial or Interleukon II. We opted for the clinical trial that gave John three good months of quality time at work and at home. It also coincided with Christmas and a very busy time of year preparing the annual school budget. John believed that God had worked out the timing perfectly so that he could accomplish what he wanted to do and still receive treatments. Unfortunately, the results were not as good as we had hoped and some of his sites had grown.

We switched gears and John agreed to undergo Interleukon II treatments. The first week of treatments was extraordinarily draining both physically and emotionally for John and also for me. Interleukon II is given over a three-week period of time. One week in the hospital, one week at home and then a return week’s stay in the hospital.

In retrospect, one of the hardest chapters in our journey was the time between the Interleukon II treatments. When John arrived home after the first week, he said he would not go back. I asked him to give it a few days before he finalized his decision. I knew the time would come when he simply could not subject himself to treatment or that his body would not be able to fight any longer. But I really wanted him to try to do this.

The second week of treatments was scheduled right around Valentine’s Day. He finally agreed to go but he told our son that this was his Valentine to me, he was not undergoing this treatment for himself, he was doing it for me. The return trip for the second round of treatments was one of the most difficult trips I ever made with him. The good news was that his side effects were not as severe during the second week of treatment and the results of the scans were very promising.

John was very involved in introducing a global exchange program with schools in China. He had made one trip with other educators and wanted to make a return trip with adults from the community to expose them to what a global education could provide students. He had made all of the arrangements and planned to lead the group of 74. After the Interleukon treatment, John had returned to work on a limited schedule. Three weeks before the planned trip to China, he could not climb the stairs to his office. But three weeks later, John climbed the Great Wall of China and mounted one of his most defiant acts of sheer will and determination to achieve his goal of living life fully.

John officially retired from public education that spring. During the summer he started another round of Interleukon II and a new job as the president of the school he had graduated from. Giving service back to this school had been one of his life long goals. Unfortunately, the results were not as good this time from the Interleukon.

Although he was working full time, he wanted to fit in as much travel as we possibly could. We were on an accelerated retirement plan. He had always promised me a trip to Greece for our honeymoon. When we had married 37 years before, we did not have the finances to go to Greece. Right after we were married, he brought me to the play, “Grease” in Boston. After the second round of Interleukon II hospitalizations, John kept his promise and we had a wonderful trip to Greece. Every day is a gift and nothing is taken for granted.

When we left for our trip to Greece, we had been told that we had two possible options: one was a targeted cell therapy treatment that required a biopsy to determine eligibility and the other was a 2-month stay at the National Cancer Institute in Bethesda, Maryland for an adaptive cell therapy treatment plus yet another round of Interleukon II. A grueling option but one that showed some promise for more quality time.

When we returned from our trip, we learned that John did not qualify for the targeted cell therapy treatment but a promising new immunotherapy clinical trial, MDX 1106, had opened up and John was a strong candidate. He got the last slot open and a brand new fantastic chapter in our cancer journey began.

Our oncologist explained that provided shrinkage or stabilized results were achieved, participation in this trial could last up to three years. This was music to our ears. No one had been talking beyond scans every 8 weeks. John could not wait to sign up and get started. It took six months before we started to see dramatic results in the scans. Waiting for results was torturous but the bonus was that John did not suffer any major side effects from this treatment. For two and one half years, John received treatments intravenously every other week at the Yawkey Center at Mass General.

The quality of our life during this time was phenomenal. John worked full time and every chance we got we traveled together and with our family. Scheduling trips was difficult because they could not exceed 12 days due to clinical trial restrictions. There were many times that John received a treatment and we left directly from the hospital for the airport. We went to Yellowstone National Park, the Grand Canadian Rockies, a trip to the Amalfi Coast and a Baltic Cruise. There were some occasions where we had to slow down our pace but we felt that whatever we were able to do on any given day was a gift. We created wonderful memories together. We lived with and for the hope of one more adventure together.

We have three adult children, two of whom were married prior to John’s diagnosis. One of John’s biggest dreams was to walk our younger daughter down the aisle on her wedding day and to dance with her to “Somewhere Over the Rainbow.” Our daughter’s wedding was a huge milestone while living with cancer; one of the many happy days that we shared together with family and friends. The circle of life continued for us as another grandchild was born during the course of John’s treatments. Individually, each milestone brings its own special joy. Collectively, we celebrated life together with our children and their children by making the time to spend precious time together on family visits and trips. In the end, we achieved a high degree of quality time and the circle of life continued.

John participated in this clinical trial for 2 ½ years with amazing results. Our extraordinarily compassionate oncologist shared in our joys and disappointments of John’s response to different treatments. He understood that he was treating a person and a family not just a disease or a number in a study. He told us that John’s success in stabilizing and shrinking his cancer tumors with this clinical trial was a high point in his career. John was proud to be able to contribute to the research that might one day lead to a cure. We knew that we had been granted an extraordinary extension of quality time. However, MDX1106 had run its course and the time came when it was no longer effective in stabilizing John’s cancer.

He started having evidence of new growth and new melanoma sites, one of which was in his tonsil. He had to have the tonsil removed. We viewed this as good news because we knew they would not have subjected him to the surgery if it wouldn’t improve his chances of survival. He had the surgery while he was also undergoing Ipilimumab or Yervoy treatments. We had planned a trip to Hawaii to celebrate our 40th wedding anniversary. I really felt the trip would be too taxing for John. I told him he had played his cancer card one time too many. But he was determined to go and we enjoyed ourselves.

Finally, the Yervoy treatments started to get the best of John and he ended up with emergency surgery for a perforated bowel. Anemia started to become a chronic problem. After a series of setbacks over several months, it was finally decided that John needed hospice involvement.

Throughout the five years, we had been very honest with our children about what was going on. The teacher in John wanted to demonstrate that you live life fully, love with all your heart and you leave this life with no regrets. Towards the end, he wanted our grandchildren to know that he was sick and could not get better. He explained that all living things die one day but love lives on. Cancer cannot take that away from us. This is the circle of life.

One of John’s hopes was to live to see our younger daughter’s first child born. John’s cancer journey started with the birth of our third grandchild and it ended with the birth of our fifth. The baby was born five weeks before he died. And so goes our circle of life. My daughter and her husband are now expecting our 6th grandchild this summer, which will be two months after the first anniversary of John’s death.

John was a registered organ donor. When John died, I asked the doctor if there were any chance his organs could be used. I was disappointed when he said no. Later, as my son and I were driving home from the hospital, I received a call from the New England Organ Bank telling us that if I would agree to provide a medical history, John’s corneas could possibly be used. I was overjoyed to think that John, who was such a visionary, would be able to give two people the chance to see. This would be the final gift of John’s legacy.

We continue to celebrate John’s life through the people whose lives he touched and the many happy memories we shared. Those who mourn the loss of his physical presence keep our eyes, ears and hearts open to signs of his continued presence in our lives. Life is forever changed but we are so much richer for having shared it with him. In all of this, I still strongly believe that we were given the gift of cancer so that we would not lose sight of how precious our time is and to make the most of each day, whatever it brings. The lyrics of the song, “The Circle of Life” from “The Lion King” capture it best:

Suzanne was a committed volunteer, supporter and friend of the Melanoma Foundation of New England. She was passionate about sharing her story and joined our Your Skin Is In Speaker’s Bureau to warn high school and college students about the dangers of tanning and importance of sun safety. She was only 40 years old when she lost her battle with melanoma on May 21, 2012.

She journeyed long and hard but did so with grace, love of life and hope. Hope is inspiring. It can define the quality of life during very difficult times not only for those struggling but for those around them providing love and support. We will keep Suzanne’s memory alive with an annual Suzanne Donahue Keeper of the Hope Award, given to individuals who are inspirational, who teach us about the importance of giving back, and who define hope for us in the darkest days.

In December of 2011, Suzanne wrote the following letter to help raise funds for this cause that was very important to her.

Suzanne’s letter:
“With the end of the year quickly approaching, we are all gearing up for the holidays and hopefully finding time to reflect on the past year. For me, personally, this has been a year of significant change. It began with the 3 year anniversary of my initial stage III melanoma diagnosis which was in remission and I was looking forward to getting more involved with the Melanoma Foundation of New England’s initiatives. The opportunity to use my story to help prevent someone else from having to go through what I’d been through was the proverbial silver lining to my experience.
In May; however, my annual scans showed that the disease had returned to my lungs and liver. Life was once again turned upside down with surgeries, hospitalizations and various treatments and the terrifying fact that I was now stage IV. With this shift, I found myself relying again on the Foundation’s resources. The patient and caregiver support groups have been a huge comfort to my family and me and their symposiums have provided us with the opportunity to learn about cutting edge treatments. On a personal level I have received a lot of encouragement from the people I’ve met through the Foundation.
The Foundation has been a key factor in helping my family and me get through the past three years. As an active patient, we have utilized the many services they provide to help cope with the disease and as a survivor they have provided me with a forum for doing something positive with such a terrible illness. With out the Foundation, a significant part of my arsenal in fighting melanoma would be missing.
Their reach of programs extends far beyond my situation, though. The new “The Skinny on Skin” is geared towards educating salon professionals about skin cancer, and “Your Skin is In” incents high school and college students not to tan for spring break and prom. I applaud the Foundation for their ongoing efforts to make sure the public is aware and educated about this disease.
Today, I am writing to ask you to support the Foundation so the resources they provide to patients, families, survivors and the public can continue to thrive. With out your generous contributions these programs wouldn’t exist. Join me in ensuring that the messages about awareness, education and early detection are widely and broadly communicated so no one has to endure a late stage diagnosis and those of us dealing with such a diagnosis have the means to get the help we need to cope with it. Together, I know we can do this!”

Jason “Jay” Farley was the loving son of Gary and Brenda and was a best friend and big brother to Matt Farley. Jay had several relatives and friends that he loved all so dearly. Jay was raised in Methuen, MA and attended Central Catholic High School with the class of 2001 and Salve Regina University in Rhode Island with the class of 2005. Jay also had an incredible love for all animals especially his Bull-mastiff, Otis. Jay was so full of life. He was funny, kind, extremely generous and had a great sense of humor. He was loved by many. Jay loved spending time fishing and playing Poker with his friends. He especially enjoyed entering several Poker tournaments and spending his summer months in Las Vegas for The World Series Of Poker Events.

On March 4, 2013 one month after his 30th birthday, Jay suffered a severe seizure. He was taken to Mass General Hospital in Boston where he spent three weeks. Several test and biopsies revealed 20 plus inoperable tumors on his brain and 1 on his lung. The diagnosis was Stage IV Metastatic Melanoma and he was given just 4 months to live. At this time, he was put on several medications including high doses of steroids and Zelboraf. Radiation began immediately.

In June of 2013 tumors began to shrink and Jay was taken off the steroids and Zelboraf to qualify for the new PD1 trial. At the end of the month, tests revealed 1 new tumor on the brain and he was disqualified by the drug company from this trial. At this time, he was put back on steroids and started the Mek/Tafinlar Combo along with more brain radiation. At that junction Jay was given only 2 weeks to live. In September of 2013, Jay’s test showed the brain tumors were stable but the tumor on his lung grew to fist size with a large blood clot attached to it. Jays only chance of survival was to start a risky radiation treatment to the lung, but chances of surviving that procedure were slim due to the close proximity of the heart. Jay refused to give up and decided he would take this risk. He was determined to at least be able to celebrate one more Christmas with his family and friends. The tumor shrank just enough and we had an amazing Christmas and New Years with family and friends. On January 24, 2014, tests revealed that the tumor was large again and that there was nothing more they could do for him. All medicines had to be stopped and he was given just days to live.

Jay lost his 10 month courageous battle on January 28, 2014 at MGH surrounded by his family and friends. It was Jay’s wish that we start raising money to help with research and awareness for this terrible disease.

My beautiful Ginger kid was diagnosed with melanoma the first time in Feb, 2012. 4 months later, after 2 surgeries and 100s of stitches, he was declared “cancer free”. This was his senior year of high school. He was working about 25 hours a week and going to school full time. He was looking forward to a Halloween trip to NYC. He was a normal kid going to college and doing normal kid college things.
Connor was born with a congenital naevi on his left side scalp. It was small – about half the size of my pinky finger nail. About 1 child in every 100 is born with a naevi so this is not uncommon. The risk of the naevi becoming malignant melanoma in a child born with this type of naevi is less than 1%. Typically, if it is going to become melanoma, it happens during puberty. Connor visited a dermatologist AT LEAST once per year and during his preteen years – it was several times a year. Beginning at birth, and over the years, I asked about this spot. I asked numerous times about removal. Each time I was told, we don’t normally remove them, we just track them and if there’s a change we address it.

Connor had other risk factors, however. Very very fair skin, red hair, blue eyes, male, and at a very young age he began having skin abnormalities that were tracked by a dermatologist and many were removed. Some biopsies came back with abnormal cells, some did not.

As Connor grew, the spot on the side of his scalp grew also. In his early teen years the spot began to change colors. It was biopsied several times and always came back normal.

In February, 2012, Connor was getting his hair cut by his regular hair stylist. He saw her about every 3 months so she was quite familiar with his hair and scalp. On this particular visit, his hairstylist mentioned that the spot on the side of his head looked different and had grown. We were so alarmed that that afternoon we visited our dermatologist. Our local dermatologist took one look and said he didn’t even want to biopsy it; it just needed to be removed quickly. But because of the location is was complicated. The next week we established Connor as a patient at the melanoma clinic at Stanford. It was clear by their visual reactions that they knew Connor had melanoma. Within the week, we had it removed and lymph nodes biopsied. It was a complicated removal because of size and location and we knew we would have to be back for cosmetic repair after the initial surgery. Fortunately, the biopsy showed that Connor was clear in the margins and lymph nodes – so no additional treatment was needed. But certainly follow up appointments with oncology were imperative. We had completed 1 or 2 cosmetic repair surgeries and had planned the last one for a couple of years out.

Connor graduated from high school in June, 2012 and began college the following fall. He was a full time student and beginning May 2013 was also employed full time. It was during the summer of 2013 that we began to notice that Connor was tired more frequently, but attributed this to his work and school schedule. He showed no signs of sickness. He visited his regular family doctor for a check up in September, 2013. We discussed his fatigue, but all of his labs came back perfectly normal.

The 3rd week of October, Connor saw 2 black spots that formed on his skin – one on his eyelid and one on his forearm. When we look back at this time – in reviewing photos that he had posted on face book the 2nd week of October – there were no black spots – so this literally happened overnight. We made a doc appt for November 7. Still, Connor was working and going to school full time. On October 31 our family gathered in NYC for a family weekend vacation. At dinner on November 1, Connor let me know that he felt awful – he said his entire body hurt and he was incredibly nauseated. The next day was spent in the emergency room in NYC. It was during a routine CT scan that we discovered numerous nonresectable tumors in multiple organs – liver, kidneys, adrenal glands, lungs, stomach; they were throughout his entire body.

We flew home and went directly from airport to the emergency room at Stanford where Connor was immediately admitted. Additional CT Scans and MRIs showed tumors in his bones and every organ in his body except for his lungs and brain.

Connor had one round of IL-2 chemo, but when testing came back and showed that Connor was BRAF positive, he qualified for one of the newest medications – that was having a very high success rate. We immediately switched to this medication combo (Tafinlar & Mekenist). Five weeks into the treatment, on December 16, we had our first scan and discovered that the combo drug was showing great results. Some of his bone tumors had disappeared completely and many of the other tumors had reduced in size. We believed we were heading for a recovery.

However, Connor never seemed to feel well at all during this time. He continued to need pain meds and he continued to sleep a lot – 18 to 20 hours a day. This was attributed to the pain medications he was on because they were so substantial. Just after Christmas Connor had a seizure episode which took us back to the hospital. It was then that we discovered that while his meds were effective throughout his body, they were not effective in crossing the brain barrier and protecting his brain. He had numerous “too many to count” tumors throughout his brain. On December 30, we were told that the next step would be whole brain radiation and were preparing to start that on January 2, 2014.

December 31st, New Years Eve, was a good day. We had a room full of friends and Connor, while sometimes disoriented, laughed and joked and was himself. It was the last good day. You never know something is the last until it is.

On January 1, 2014, Connor woke up and I could tell that something was very very different. He could not verbalize very well. He could not articulate names of people though clearly he recognized them. He said Mom. We walked around his hospital floor. We looked at the view of The Golden Gate Bridge. He cried. He said Mom. Then he had a seizure and after 3 hours we were finally able to stabilize him with medications.

I was told at 2 pm on January 1, 2014 that there was no hope. There was no more treatment to be done. His tumors had spread too far. I had to make a decision that no person, no parent, should ever have to make. We stopped treatment and began the saddest time of our lives. He never oped his eyes again.

One person dies from this devastating disease every hour of every day. My beautiful son, my only child, my Ginger kid, died in the hour between 2 am and 3 am on January 9, 2014. He was 20 years old.

My daughter saved my life. I went for a skin check and my dermatologist removed a mole off of my left upper arm. I thought nothing about it. A few weeks later I received a call that I had melanoma and that I needed to come into the office immediately for surgery until the margins were clear.
I was so afraid. My daughter was only a year old. I searched on the internet, and I found two extremes. Hope and despair.
I went through the surgery just fine. I have had many more moles and surgeries since, but I remain melanoma free at this time in my life. I wish I would have known growing up the they really do mean it when they say sunscreen is important. I feel like I was given a second chance after the birth of my daughter, because the only reason I went in for that skin check when I did was because I noticed that my moles had changed some after giving birth. Thank goodness I went in when I did. I am blessed!!

I was diagnosed with malignant melanoma during the summer before my senior year of high school. At the time I had no idea what melanoma was. My mom noticed an irregular mole on my back while, ironically, applying sunscreen. We had it checked out and lo and behind it was cancer. No one really explained to me the seriousness of my diagnosis, but I happened to be working at a library at the time. I did my own research and remember sitting in between the stacks crying and in shock.

I missed the first 2 weeks of my senior year and my surgery was on my best friend’s birthday. I also missed my cousin’s wedding and couldn’t play my last season of soccer. That alone would make the average teenager pretty annoyed and unhappy. Looking back I really can’t believe that it even happened.

Now, at 29, I go to the dermatologist at least twice a year and I can’t shut up about how anti-tanning I am. I’ve lost track of how many moles I’ve had removed and biopsied. I will spend the rest of my life freaking out whenever I forget my sunblock at home or miss a spot and get a minor burn.

With all of that being said, there is a bright side. An extremely bright side. I am now very educated and outspoken about the disease. I am so grateful that my cancer did not spread and, as of today, has not returned. I love my life and am getting married next year. That may never have been possible had my mom not found that fateful mole.

I have never told my story from beginning to end so I hope that it helps someone who is going through a similar experience. I will now leave you with two awesome quotes:

“When it rains it pours and when it shines you get melanoma.” – Sol Luckman